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It is time to look at paralysis

I wonder how many
people with severe ME experience paralysis. I have only actually
heard of a couple of people and I have never know anyone personally
who experiences it in the same way as me. I think that when people
say they are paralysed we all think it means the same thing. We don't
ask for more information. So we don't get a clear picture.

In severe ME no one
seems to take much notice of it, even the doctors and it tends to be
rarely put on any list of symptoms, even though it is so serious and
extreme. In fact most neurological symptoms tend to be down played in
ME, thus we have the totally misrepresenting image of the 'tired all
the time' person whose fundamental symptom is fatigue. No. That is
not me and if it is you then I doubt you actually have ME to be
honest. That or I don't!

In fact the people I
have known with the worst symptoms, often think they may not have ME
because their symptoms are so extreme that they simply do not fit in
to the popular image, even the ones presented by the main charities.
They simply forget to include the most extreme neurological symptoms,
the paralysis, the shaking spasms and tremor, the swallowing
difficulties, the numbness, the loss of proprioception, the
dysautonomia, despite the fact that ME is a neurological disease.
You'd be hard pressed to name the neurological symptoms unless you
had read the ICC criteria. You certainly wont find them in the Oxford
or Fukuda criteria or the CDC criteria. So how come they are
dominating our lives and our neurological disease? Who has
misrepresented us? The line is long, but I digress.

My purpose in writing
this piece is to raise awareness of the reality of my paralysis and
ask others if their experience is similar? Or different? I do not
believe any one has studied paralysis in ME. I want to do a survey. I
want to try and find out who has paralysis and what it is like, how
they have been treated by the medical profession, how they cope with
it, what it feels like and whether they have been given any medical
treatment for it. Or found anything that helps it. Or has it been
ignored like with me or downplayed and denied?

For me paralysis is
fundamentally at the centre of my ME and quite frankly I am shocked
at how it has been dismissed, ignored, downgraded, neglected,
misrepresented and overlooked down the years. If only someone would
seriously look at paralysis in ME and understand the nature if it, we
might find a way forward for the most severely ill. There certainly
wont be one all the time we are left out of studies and research
because we are too difficult to accommodate or deal with because our
needs are so complicated, our symptoms so complex and our health so
fragile and at risk of harm and deterioration.

People will never
understand the severity and reality of ME all the time our severe
and extreme symptoms are overlooked.

Every day of my life
begins in total paralysis. I call it paralysis because I simply
cannot move any part of me. Even my eyelids are stuck fast in the
shut position and no amount of will power will open them. What else
can this be then, but paralysis? Yet the neurologist I saw dismissed
it as not real paralysis?!!

Paralysis is
described as an inability to move one or more muscle groups . On
waking I cannot move any, not even my little finger, nor even open my
eyelids, not even though I want the toilet or if I have something
tickling my face or I desperately need to move because I am in an
awkward position.

Something has caused
my body to not respond to will.

Eventually over a
period of hours I may be able to move. I begin by trying to wiggle
the toes of one foot then the other. It is always my toes that
respond first. My eyes are always last to be able to open, so I have
had to get used to moving about with them shut. I cannot open my
mouth or speak or swallow or chew. I am completely unable to
indicate that even though I may appear asleep I am actually awake and
in physical distress, needing help.

The paralysis I
experience in sleep is always total, all of my body. Intense numbness
accompanies it too, along with shaking spasms as I finally try escape
from it's clutches. Pain too is intensified , along with headache. I
am gaspingly thirsty. Consciousness awakes with a start, but my body
seems to keep on sleeping. My breathing is even and automatic like in
sleep, often through my nose as I was trained to breathe this way. It
is as if my body is still asleep but I am awake. I have started every
day like this for almost 2 decades now and it is often afternoon
before I can finally move enough to sit up, walk a few steps with
help and get to a chair. Yet I cannot support my back upright and
have to lean forward away from upright as cannot lean against a
chair for physical support due to severe pain and pressure
sensitivity. I cannot tolerate contact with my head and neck against
any surface.

Still I cannot bear
conversation. I stare unable to focus, my eye muscles still
paralysed. My eyes remain painful and struggle with focussing all
day. My sight is blurred. I have double vision. My noise
sensitivity is increased and the paralysis although it has shifted in
some groups of muscles enough for me to get to the next room, has not
left me, it never does, I remain very close to near complete
inability to function and can return at any moment more severely.

This is not the only
sort of paralysis I experience though.

Once up and with
limited movement, I can suddenly feel my limbs becoming numb and
lifeless. I often lose feeling, sensation, proprioception ( bodily
awareness of the limbs) and my hands, arms and feet lie lifeless,
useless, unable to feel or move. They have no use. This may be for an
hour or several, it may be for days or weeks even. It may be more
predominantly one sided, it can be left or right and it also creeps
into my face so that I am palsied, my mouth will not smile on one
side. My eyeballs swell and feel numb and I stare like a fish. I have
no control over this. It comes and goes as it will.

If I sit too long in
one position my body moves closer to paralysis and inability. If I
lie down I get paralysed a lot quicker than upright. The nearer I am
to sleep the nearer I am to full paralysis, but it can come on
totally when lying down, just by trying to relax or rest. It appears
to be rest and relaxation of muscles that trigger the whole body
paralysis. But I have become aware that there are other triggers of
the limb paralysis: being too cold, being exposed to loud noise or
any noise that I experience as too loud, doing too much, sitting to
long, overuse of a muscle and possibly certain foods too, though I
am not certain of this one as it could be post- exertional reaction
to a different trigger.

Paralysis then is
central to my existence and dominates every movement and every moment
of my life. I am in a constant continuum with paralysis either moving
towards it inadvertently or trying to move away from it till it
hijacks me again.

Surely you would
think that such serious and extreme symptoms and bodily dysfunction
would have been properly and thoroughly investigated, treated with
concern? Yes, you would think it, but in fact the opposite has
happened.

Initially there was
some interest in my symptoms, though at this point I don't believe I
was, though suffering from severe shooting pain, pins and needles
and numbness, exhibiting the same levels of paralysis. That came
after they gave me a high dose of Ametrypteline , whilst pretending
it was a small one for pain, believing I had depression, which I
insisted I did not have. First I had a nerve conductivity test done
and an MRI on my brain, which apparently showed up nothing. At this
point I was told that there was nothing seriously wrong with me and
all I was experiencing was just discomfort. This was a total denial
of the extreme agony I was in.

Now I know that you
have to have the right sort of MRI scan to show up dysfunction in ME.
Back then I trusted people to know what to look for and what tests to
do. I now see how naive and unaware we were. To describe my reality
so dismissively was shocking. They were not experiencing it so they
could not imagine the agonising constant stabbing burning, throbbing,
shocking amount of pain I was in, nor the pins and needles, the skin
crawling irritation, the weakness, the loss of function, the
headaches, the nausea, the falls as my body stopped working. They
could not imagine it nor could they believe me nor accept it so they
negated me and my paralysis along with it.

When I said I cannot
stand, I was told I had lost confidence in standing. I could not bear
the pain. I blacked out, I felt peculiar. I fell over. I could not
move. That was my denied reality.

Much later I saw a
second neurologist. The first had already declared me wrongly
depressed. When I said I had tinnitus, the doctor wrote on the
referral that although I said I had tinnitus, he said I had
depression. I was treated very dismissively as a result. The second
neurologist actually misrecorded what I said and some of the test
results, saying there was nothing seriously wrong and all I needed
was reassurance. He said that in his opinion I did not have proper
paralysis. Perhaps he would like to try living like this, unable to
move, before he decides what true paralysis is. Where I expected
help, support, investigation, explanation, I got negation and
derision and misrepresentation. I was in the Psychiatric bin as far
as neurology was concerned. Just not interested.

Some time later I
lost the complete use of my right hand constantly for 6 months which
was unusually long. This was more interesting because it gave me a
tiny clue that paralysis can be caused by phenomena other than nerve
damage. The consultant doing the test was kind. He could see I could
not move my hand or fingers. But still the electrical conductivity
test was fine. Of course this only shows the nerve pathways are
functioning. The problem must be somewhere else.

It could easily be
in my brain for example, in the motor control area perhaps? I asked
the test consultant doing the test ,as he seemed kind , what could
be causing the paralysis, if not the nerve conductivity. He did not
say,' This is not paralysis, though he said my consultant would be
able to advise me, but he thought it might be linked to how cold I
was. My hand and arm were like a block of ice. Unfortunately I had no
consultant to advise me, so there was no more investigation or
explanation. Once you have an ME or more sinister a CFS diagnosis,
they will not look.

My next attempt to
gain help led me down a very damaging pathway. I was advised that my
paralysis was purely due to hypocapnia ( low CO2 from
hyoerventikation ) and with a very simplistic interpretation,
ignoring the physical causes for my illness in the first place, I
was told if I breathed into a Philipps mask for 4 hours a day , I
would miraculously be a lot better. Foolishly I tried to follow the
suggestions and was greatly harmed. The mask caused me to collapse
and damage my neck, it caused massive hyperventilation, the thing
that it was supposedly intending to cure, despite no obvious
hyperventilation and caused my diaphragm and back muscles to
weaken, such that my breathing is still much worse lying down , more
than a year later. I have still not recovered from the harm of a
wrong treatment protocol but what was even worse was the blame
poured upon me for not following through such a harmful technique
which was literally physically impossible for me to achieve, with no
risk assessment or consideration or understanding that it might harm
me. I since discovered there are other reasons for low CO2 in the
body, not just breathing,( in fact I was taught proper breathing
techniques many years ago when first ill) for example a poor
methylation pathway, the mitochondrial damage, poisoning, even
hypothyroidism and other possible reasons for the paralysis of Very
Severe ME .

The situation is
complex. My advice is always to make sure the people you see truly
recognise your physical reality and comprehend the harm they can do
with inappropriate treatments, never trust a simplistic view of your
situation, the multi system dysfunction is complex . Make sure they
understand the dangers of post- exertional autonomic response and
definitely check out whether they understand ME as opposed to
fatigue. I am still traumatised by my experience from trying to get
biomedical treatment. It did not help me overcome or understand my
paralysis sadly, I was just disturbingly misinterpreted.

However since that,
I have discovered a phenomenon called Hypokalemic or Hyperkakemic
Periodic Paralysis. It is triggered by a variety of things including
cold, noise and exhaustion / overexertion, sleep and resting. Ring
any bells? It is caused by imbalances of potassium in the muscles and
blood and the mechanism is a rare channelopathy. There is not too
much potassium or too little. It is just in the wrong place at the
wrong time.

But what I feel is a
fantastic insight, is that the things that trigger my paralysis
actually are known to trigger Periodic paralysis, an acknowledged
rare disease. So the neurologist was wrong when he dismissed my
paralysis as not true. He should have explored my symptom, not
dismissed it out if hand because of his views on ME which he
considered to be CFS.

Now I am not
medically trained, though I am a scientist, a biology teacher as well
as a social worker and a counsellor. And it may not be the mechanism
for paralysis in ME, but why is that I can see possible links to how
I might be becoming paralysed that no one else is willing to make? I
simply do not understand how I can have been left like this for two
decades with no one able or wiling to investigate it adequately or
sensibly or listen to me or ask me the right questions to find out
what triggers it or even observe me when paralysed . I do not
understand why those who could help do not even want to help me find
out if it can be treated. Or explain it to me in a way that makes
sense to my reality. What wickedness and travesty is this that I and
presumably others are being exposed to? And all because of
psychiatric misrepresentation of a genuine neurological disease and
wring focus on fatigue.

I know there could be
other explanations, perhaps linked in some way to polio or to the
dysfunction of the autonomic nervous system or poisoning, but this is
the first time I have ever found a pathway for my paralysis that
makes sense to me, even if it is not the whole or the correct
picture. But really, I should not be left in this state of not
knowing why I am like this, having to guess and try to discern my way
through it. And nor should any one else.

Why is paralysis not
being properly investigated or researched? Probably because it is so
often denied and underplayed. But also I think it is because we are
so ill that

we live in isolation
out of necessity due to our extreme symptoms. Meanwhile there are no
adequate consultants (that we have found ) to turn to on the NHS who
will look past the ME or CFS label and not interpret it as
psychiatric chronic fatigue or just a fatigue illness or do a home
visit or even respond to an enquiry.

No one seems to
realise that we are being poorly medically treated and are actually
seriously ill, if not dying and need medically knowledgeable
consultants and thorough biomedical testing like others with
extreme, similar symptoms, who gain respect and help, because they
have not been so unfortunate as to be given the label CFS or ME .

If no one else will
acknowledge it, why shouldn't we?

If you want to share
your own paralysis experience contact us by email on
gcrowhurst@gmail.com –
letting us know if you are in the UK or outside.

Some questions you
might want to think about.

Do you experience
transient or complete paralysis?

What is it like?

How have you been
treated by the medical profession?

How do you cope with
it?

What does it feels
like?

Do you know what
triggers it?

Have you been given
any medical treatment for it?

Have you found
anything that helps it?

Has it been ignored
or downplayed and denied?

It would be helpful
also to know whether you have been given an ME diagnosis or a CFS
diagnosis.

Thank you so much,

Linda and Greg
Crowhurst.

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